From Giving Care to Being a Caregiver

I know that I’m in this for the long haul, but more things are starting to come up that make me wonder if I’m going to be able to do everything that’s needed for my mother.  Her needs are changing, I’m making new discoveries about the level of care she really needs, and it’s starting to feel somewhat intimidating.  Am I able to put my own life on hold during this time of her life?  Is it coming to that?

How Quickly Things Change

When I first started caring for my mother, I was mostly a handyman and a housecleaning service.  I would fix what needed fixing, tend to the yard, clean house and keep things from falling apart.  At that point, she could still drive and shop for herself.  I didn’t realize how easy I had it at the time. 

Things are changing as we go.  A while back, I had to start planning and preparing her meals, and keeping read-to-go microwaveable meal containers in the refrigerator so that something was always convenient for her.  With the loss of her ability to drive, I started doing all the shopping – and besides just keeping food in the house, these days I do her personal shopping for her as well.  She doesn’t remember product brands or details when asked, but if I bring her something new or different it’s always met with disapproval and a request to go buy the right one.  But I’ve finally got her preferred products committed to memory, so return requests are rare these days.  And let me share that my first time shopping for feminine bladder leakage protection products was an adventure all its own.

A New Level of Care

There came a time not so far back when I realized my mother had let personal hygiene fall completely by the wayside.  I now assist her with general hygiene, washing her hair regularly with a no-rinse shower cap and I’ve found some great bathing wipes that I bathe her with.  I’ve gotten her to start using them as well to address her personal areas.

Over the last few weeks, she’s taken a bit of a downturn in how she feels each day.  She has willingly been using her walker around the house, and that is very significant for her – she sees the walker as her final resignation that she can no longer do things for herself and has resisted it fiercely until now.  But seeing her using it means that she needs a new level of care now that demands much more of me.

Just getting around the house has become a big challenge for her, and carrying something while using a walker isn’t something she’s able to master.  This means that I now need to be here for mealtime, for every meal.  Fortunately, working from home is something I’m able to do – but my personal time has suddenly vanished.  Deciding to go fishing for the day is no longer an option.  And this impacts more than just me… my girlfriend is feeling the pain of my new restrictions as well.

Discoveries Along the Way

I recently made a very unexpected discovery.  Last week, mother complained that her toenails were in need of care, so I bought a “Professional Pedicure Kit” that arrived on Friday.  On Saturday morning I suggested to her that we should take a look at those toenails, which is when I had the sudden realization that I had never seen my mother’s feet.  She wears socks absolutely all the time, even in bed, and all I can say is that the old adage “out of sight, out of mind” completely applies here.  As I removed her socks, a literal shower of dead skin went everywhere – her feet were covered in coarse, dry scales and I learned that her toenails grow thick instead of long.  So, this job escalated exponentially from what I expected was going to be a simple toenail trimming.

I started out by thoroughly washing her feet, and luckily, I had a good exfoliant sugar scrub on hand, so that came next.  Then came my debut as a pedicurist.  After trimming what I could, I figured out how to use the grinding tool to grind her nail down to an acceptable height – quite the learning experience, but I’ll be better at this next round.  Since then, I’ve been treating her feet daily with moisturizing lotion and they’re looking better but we still have a long way to go.

The Questions

After this thought-provoking experience… I can’t help but ask certain questions.

What’s next?  Will I be able to continue to meet her ever-growing needs?

My mother has an ileostomy, and so far she is able to maintain it without help.  Will the day come when I need to empty her bag and change it periodically as required?  What other needs may be coming up that I haven’t even considered?

What if she becomes bed ridden?  Will I be able to step up and do what needs to be done for her?  At what point will I need to bring in a professional and fully qualified home-care specialist for support?

Coming to Terms with Possibilities

I truly don’t know where this may go.  She may bounce back from her current trend as she has done in the past, she may stay this way, or she may go further downhill.  I believe, outside of an extreme care situation or a medical emergency, that I should be able to meet most of her foreseeable needs. 

I’ve begun researching professional home-care providers so I’ll be a little better prepared, should her condition get worse.  I’ll continue to do all I can as her primary caregiver, but to know that I can bring in a professional as needed to help with the bigger challenges is comforting in some ways.

But what about me? 

How do other full-time caregivers manage to lead a semi-balanced life?

Caring for the Caregiver…

Aside from the simple desire to be able to go somewhere for a night or perhaps a weekend, I have to prepare for other eventualities.  I have been able to avoid work travel for the better part of a year, but that can’t continue in my position.  I’ll need to travel – and yes, I will need days off occasionally to take care of the caregiver.

I’ve read much about “caregiver burnout” and how caregivers need to be sure that they don’t compromise their own health and well-being while caring for another.  The stress levels can be high, and especially so when I get those calls at work that she’s fallen or that there’s another urgent need for me to quickly head home.  I know that I need to find a way to get some time away, and with the recent change in my requirements, I’ve started to research the possibilities.

I’m finding that there are in-home care services that can help, and I’ll be reviewing my options.  It’s not free, it’s not even cheap, but I’m still working, so hopefully I can find a way to budget such things in.  The folks can come and spend an entire day, or just part of each day, with my mother to ensure that she has what she needs.  And if she were to fall when no one was here, my mother always wears what I like to call a “Help, I’ve fallen…” button.  If I did happen to be out of town, my aunt is also a first responder for this service, and she live close so she could arrive in just a few minutes to check on my mother and take any appropriate action.  I think the hardest part there will be letting go so that I can enjoy my break.

What it Means to be a Caregiver

There are times when it occurs to me that I really didn’t know what I was getting myself into with becoming a caregiver.  But I do know that I won’t quit on her while she needs me most.  I also know that many caregivers face challenges far beyond what I’m seeing, and I am developing a deepening sense of respect for caregivers everywhere.

I have no experience in any of this, but I’m learning as I go how to help with her ever-changing needs.  What it means to me to be a caregiver is simple.  At the core of everything for me is the knowledge that my mother feels safe, she feels cared for, and she feels loved – I truly believe that’s every bit as important as her physical care.  If she begins to need physical care I can’t provide, I’ll reach out for professional assistance. 

As long as my mother is well cared for, and she feels safe and loved, I’m doing the right things for her.  But, I’m beginning to understand that dedicating the same level of energy and commitment to my own health and well-being is just as important as what I do for my mother.

About Rod Rawls 104 Articles
A severe TBI survivor and family caregiver trying to adapt to a changing world and along the way, hoping to offer helpful tools for those with similar challenges.

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